Background: Cancer Councils New South Wales and Victoria, and the University of Newcastle (UoN) are delivering an NHMRC partnership grant examining the impact of structured distress screening on support service uptake (the START trial). In addition to study measures, participants were invited to provide feedback on their experience with Cancer Council’s 13 11 20 telephone-based Information and Support Service.
Aim: To assess user's satisfaction with their 13 11 20 interaction, and identify areas for service development and improvement.
Methods: UoN completed verbal consent with study participants from June 2017-March 2018. After obtaining consent, four additional questions were asked exploring callers’ perceptions of the consultant or nurse’s level of support, use of jargon, understanding of their situation and ability to address callers’ concerns. Open-ended comments were recorded verbatim.
Results: Of consenting participants, 227 answered satisfaction questions (46% = NSW, 54% = VIC). Respondents were mainly female (75%), married or with a defacto partner (62%), identified as someone with cancer (60%), and averaged 57 years of age. The vast majority of participants expressed that they received the support and help needed (93%); the consultant spoke in easy to understand terms (96.9%); the consultant addressed their initial reason for calling (97%); and, the consultant understood their personal situation (93%). Verbatim feedback reflected gratitude and appreciation for the support received. Individuals who provided constructive feedback focused on accessibility and potential gaps in existing services.
Conclusion: This evaluative data strongly supports Cancer Council’s ability to quickly build rapport and address the needs of distressed callers. It also demonstrates callers’ perceptions of the benefit of 13 11 20 and its instrumental role in supporting their experience as a patient or caregiver. Constructive feedback demonstrates an opportunity to better support service-users and health professionals in understanding the scope of services offered, particularly regarding practical and financial support services.